Long Covid at Two Years
I had hoped I would not be writing about this again after another year, but here we are reaching the two-year mark of my long Covid symptoms starting. Three days after that in 2022, I would be reading the positive Covid lab test through CVS and Sonora Quest. I never expected two of the symptoms, chronic fatigue and brain fog, would continue to be ongoing at this point.
Since last year’s reflection on the first year of my Long Covid, there have been a lot of doctor appointments, tests and scans. A year ago, I was hopeful from the high C Reactive Protein and Erythrocyte Sedimentation Rate tests we were close to already having a solution. Those two tests show indications of inflammation in the body. However, while the rheumatologist did find similar results in a second set of those tests, she explained to me they are too vague and could be caused by a multitude of things that can’t be narrowed down if nothing is going to show up on other tests or scans. The running theme across all the specialists would begin here, as she would test me for many autoimmune illnesses, such as Lupus, and they no tests returned positive I had any of them. Which is great news except when you are trying to narrow down what is causing your ongoing symptoms. The last appointment with her would end with her telling me the results of the tests, she would say it looks like it is chronic post Covid-19 syndrome. This term is what is referred to when you hear Long Covid.
Running in parallel of those appointments was the neurologist referral. She would run cognitive tests and had a brain MRI done, but like the rheumatologist, she found no issues. With the CRP and ESR tests above, she had a neck CT scan done to verify no inflammation there. In addition, this was where I saw a different angle on trying to diagnose long Covid. She followed those up with a series of blood tests for everything my primary physician had not done yet, including HIV to West Nile. She wanted to eliminate everything it wasn’t before she would call it long Covid. With everything coming back finding no issues, she would send me onto my next referral, an allergist.
Why an allergist? Because of my chronic fatigue, I have felt a constant weight under my eyes and her thoughts were maybe its location near that of my sinuses could be a cause. So, continuing my path of specialists the past year, I was put through another series of tests. He did find I have some moderate allergies. They were allergies I never knew about to various grass, tree pollen, and fungi, but nothing that could be related to my symptoms. He would end up sending me over to an ENT to verify the uncomfortable feeling I felt in my upper left sinus wasn’t something he was missing. The ENT would do an X-Ray and CT scan in addition to physical examination. Like the rest of the referrals, he would find nothing, and things were in good shape for me. This once again, left me with good health news, but no answers for my long Covid symptoms.
This would be the point returning to my PCP with all the results from those physicians at the end of December. From here, she wanted to eliminate any remaining things she could think of possibly causing my symptoms. She tested for Epstein-Barr Virus, something that sits dormant in 90% of people and they were finding Covid has been triggering in some. Luckily, while the test showed I had antibodies for it, there were no signs of an active infection removing that from the list of causes. In these tests there would be the first time we saw my hemoglobin and red blood cell count drop below the normal range. Before fully declaring it anemia, she put me on an iron supplement to see if improvement next time we test it. She had done an EKG alongside over multiple appointments listened to and checked my breathing and heart. Alas, nothing gave off any indication of an issue. Although this would be where to eliminate all possible other known reasons outside of Covid, referrals to cardiology and pulmonology would have to happen. Plus, with the cardiologist results, she could check my heart health for possibly trying stimulants as help for my condition.
So, with that in mind, another pair of specialists’ appointments running in parallel began for me. For the pulmonologist, right off the first appointment she heard no issues or saw anything on physical inspect of my breathing. To be thorough given my symptoms and eliminate any possible things, she did have me do a lung X-ray and breathing test. They found my lungs to be in great shape, able to take in and expand with breathing. There was no asthma found. She checked my CPAP to see no issues to date and compliance. Then would recommend my first stimulants, as she stated I hit all the marks for daytime sleepiness to qualify but leave it up to my primary. She was another physician who would say based on the results she saw it looks like long Covid.
Finally, with cardiology we had a bit more tests and things they had me go through for examination. First, they listened and took an EKG, which once again showed no signs of any issues. Second, to be thorough, they then decided to do an ultrasound, treadmill stress test and five-day heart monitor. The ultrasound found clear pathways in my heart and neck. The heart monitor found a fractional number of palpitations, the nurse practitioner reviewed the results saying about .001%, and that it wouldn’t be anything to be concerned about. The stress test, however, did reveal that there was plaque found, but was not clear on how much or where. So, from here, they asked me to do a heart CT scan. This would be one that found some plaque build up in my LAD, left anterior descending, artery, but every other path was minimal plaque and clear. On review, they said it wasn’t an amount of plaque to be worried about and it wouldn’t be causing the symptoms I’m experiencing. Another physician that would say with the results, it looks like long Covid.
Feeling doctor appointment fatigue, I finally had run the course of seeing specialist and Covid was singled out as the main cause of my chronic fatigue and brain fog symptoms. Now was time to experiment with possible remedies to help my symptoms. Up first was experimenting with an anti-depressant, Venlafaxine, hoping the increase in serotonin would be what helped me feel improvements as some Long Covid research has pointed to. Unfortunately, even on the half dose and later updated to full dose, 75 mg, I have not felt any improvements. Next the stimulant was to be tried after the clean results from my cardiologist and my pulmonologist recommendation. I was put on the stimulant, Modafinil. This has made some difference but has not prevented any of my chronic fatigue crashes. For a positive, it has improved how I feel most of the time between chronic fatigue crashes. Because of that, it was doubled to see if any improvements further, but that has only found me more fatigued and exhausted, so improvements have been limited.
While all these appointments are going on, I have been trying to navigate living a semblance of a life. It continues to be difficult to enjoy many outings when two to three hours tends to bring on the chronic fatigue spells I lovingly called “brain melting” in last year’s reflection. To better describe it with another year of experiencing it, it is as if my head is swimming. It is like an alcoholic buzz, but I have had no alcohol. To make matters worse, the swimming feeling only gets worse the more I push it. Whether standing at a concert, trying to take one of my many walks around Kiwanis Park lake, playing video games, to just writing this reflection on two years of Long Covid. It brings with it the overwhelming feeling of wanting to sleep the stronger it gets. That means, I continue to have to err on the side of caution with most things in Phoenix needing to drive to and get home safely.
That is not to say, I haven’t made any effort to make it out to a show occasionally or other activities. I just exert caution when I do. I’ve managed to catch a handful of shows between, including finally seeing Jer’s solo project to another Punk Rock Bowling of mostly club shows and pool parties. Which on the note of Punk Rock Bowling, that is something I could not have attended any of without the help of friends to get me to Vegas and one amazing friend getting me a pass so I could show up late to catch a bucket list artist, Madness, in the main festival. I continue to be super grateful to everyone that has helped me over these two years, from John to Wayne to Gabby and Chris. I wouldn’t have caught more than half of what you saw me out at without their help. Additionally, thank those that have been helpful and considerate when you see me out. As for employment, thankfully, I am working a remote job that has been very accommodating to my symptoms. So, I have been able to keep an income and roof over my head.
Nonetheless, the past two years have not been without frustrations. It is a moving goal post of seeing concert announcements and thinking I will be better by then. Days and nights where telling myself I’ll push through for something I was looking forward to, that my chronic fatigue ends up so heavy I must call it, unfortunately. There are moments watching social media feeds wondering what I did wrong with Covid. Seeing friends navigate it fine and enjoy what was my normal to only my confusion. Just wondering why has it been more severe for me than them? I know I said it before, and probably was mistaken when I said it that first year, but I do feel like the moments of frustration have become less in the last year. That it is a good sign I have accepted more of my situation. It has helped to see friends and acquaintances understanding my situation and expressing support, too.
Which brings us to the now, two years of long Covid. What is next in the path looking for answers? First, in my annual physical tests, we have found my red blood cell count and hemoglobin to continue to decline ever since I caught Covid in July 2022. It wasn’t noticed until it went out of range on tests end of December. In the most recent tests, my hemoglobin and red blood cell count has not pushed those results back into normal range. Meanwhile, my iron, B12, and folic acid are in normal range, so those treatments will not be what we can use to help. With that in mind, that eliminates iron and vitamin deficiency anemia and means it could be an ongoing infection, such as Covid, tumor, or cancer possibly. There is recent research from Cambridge connecting Covid and anemia, so it could be that. My primary physician is now referring me to a Hematologist for a deeper look to see what is causing my anemia.
Second, research in the medical and science community continues to find new developments and support for how Covid and Long Covid are affecting us. Because this is a disease that long Covid clinics and doctors have seen around 200 different symptoms of, it just will continue to take time for answers from more research. This correlates to stories I have had friends, acquaintances, and random social media followers tell me of their own long Covid stories. Not everyone has had the same symptoms, ranging from continuing loss of taste to GERD issues. So, within ongoing research there is a hope to be found, too.
As for me, as I continue to navigate more tests in my quest for answers, I will continue to get out to the occasional show here and there. I love live music, I miss seeing it on a regular basis, and there is nothing like that experience. To not push myself too hard, I’ve only set the goal to make my weekly Every Show Joe Says Go! videos. That comes with the caveat that if my chronic fatigue is extremely bad that day, I will not force it for that week. I want to continue to help others find concerts to attend, even while I can’t currently make it out like I used to. I remain optimistic that I will improve through either natural healing, as one research found on average their patients got better after 31 months, or through answers found through medical science and the further specialists I see. Thank you everyone that has kept tabs on me and been supportive of me during this entire time. I am hopeful in the coming months I will get to see you all on a regular basis like I used to.
